Rett Syndrome

DEAL works with people
with Rett Syndrome

Rett syndrome is a rare neuro-motor disorder which mainly affects girls. Girls with Rett syndrome usually lose their ability to talk and use their hands functionally before the age of two. Some lose the ability to walk. Doctors used to think that the cognitive skills of girls with Rett syndrome were as severely affected as their speech and motor skills. This perception has been challeged by the achievements of girls given access to appropriate physical therapy and augmentative communication strategies. The present consensus view is that given on the International Rett Syndrome Association website -

"Apraxia (dyspraxia), the inability (or reduced ability) to program the body to perform motor movements, is the most fundamental and severely handicapping aspect of RS. It can interfere with every body movement, including eye gaze and speech, making it difficult for the girl with RS to do what she wants to do. Due to this apraxia and her inability to speak, it is very difficult to make an accurate assessment of her intelligence. Most traditional testing methods require her to use her hands and/or speech, which may be impossible for the girl with RS. Her mobility may be delayed and she may have difficulty crawling or walking."

Most girls with Rett Syndrome who have come to DEAL have been able to establish enough communication to show that their underlying learning capacity is unaffected. At DEAL we'd be very reluctant to conclude anything about the intelligence of a person with Rett Syndrome (or any person with a diagnosis of intellectual disability) until we'd seen what measures could be taken to improve their physical abilities and their communication methods.